Openevidence Omdömen 26

Great AI scribe for clinical documentation. Includes timely research based evidence supported recommendations for treatment decision making.

Failed repeated requests for disclosure of financial conflict for physician advisors, collaborators, sponsors. Unsubstantiated claim as leading medical information platform

I have asked some specialized medical questions to help me answer as an attending physician at a major hospital. Unfortunately some of the answers are either watered down or not accurate enough which could affect patient care. You’lld think they’ll spend more time cursting thier answers for recency and accuracy.

I have ME/CFS and your application is suggesting graded exercise therapy. This ranges from not helpful to actually harmful. Any Dr giving out this as a treatment could be subject to malpractice. The PACE study was not properly peer reviewed before it was even published and debunked over a decade ago. How is this still being pushed as a treatment? This belief cause me actual physical and mental harm.

Graded exercise therapy and CBT are not appropriate treatment for MECFS and studies that encourage them for treatment have been disproven. They are actually contraindicated for MECFS patients and this program is promoting modalities that can cause permanent decrease in baseline status and functioning

This is all based on phony evidence. You are going to ruin people’s health and lives and cause a great deal of suffering. Shame on you. Do your research. Do better.

Answers provided concerning the treatment of ME/CFS are inaccurate and potentially dangerous.

OpenEvidence references outdated information and advises doctors to recommend dangerous "treatments" to their patients. These treatments have been proven repeatedly in studies to harm patients and are no longer recommended, as per the NICE guidelines. If OpenEvidence doesn't change this and update their information, doctors will continue to make mistakes at the cost of their patients' wellbeing. Please be wary and do your own research before trusting this program. There may be mistakes and inaccuracies regarding other conditions as well

OpenEvidence is recommending wrong, outdated and debunked treatment options for ME/CFS.

GET and cognitive behavior therapy or similar have been totally disproven for ME/CFS, and are actively harmful for ME/CFS patients.

There are several recent scientific papers discussing this.

OpenEvidence need to seriously up their game, keep abreast of current research, and stop making recommendations that can harm patients.

OpenEvidence is recommending a debunked study. The study says Graded Exercise Therapy (GED) helps people with ME/CFS. It has since been proven that GED actively harms people with ME/CFS, sometimes very severely.

Since 2021 The National Institute for Health and Care Excellence (NICE) has advised that GED not be undertaken by people with ME/CFS.

Openevidence need to update this urgently, before more people are damaged from taking their advice on this matter.

Information in this app is inaccurate and does not reflect the current evidence base and NICE guidance.

For instance, with regards to ME/CFS the app states:

"Treatment for CFS is primarily supportive and symptom-based. Cognitive behavioral therapy (CBT) and graded exercise therapy (GET) have shown moderate efficacy in improving fatigue levels, functional capacity, and quality of life."

NICE (2021) guidance states that both CBT and GET are contraindicated for ME/CFS, with the NIH stating that GET can be harmful. CBT is recommended only for treatment of associated mood disorders and acceptance of the diagnosis.

"In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken." (NICE, 2021)

Graded exercise therapy for ME/CFS is harmful.

Openevidence is doing active harm to the ME/CFS community. Sadly, due to COVID-19, more and more people are
being added to this community and put in harm’s way due to the outdated and incorrect information Openevidence is spreading. Graded Exercise Therapy (GET) has never been helpful and has been thoroughly debunked by experts as well as sufferers, and yet they continue to reference it as a valid treatment for ME/CFS. This is unacceptable and inexcusable.

Gives harmful "treatment" advice for M.E/CFS that is outdated and debunked. Particularly the recommendation of GET which has been shown to be harmful to these patients. This tool is not good enough and could actively damage patients health. I assume this is not the only error, though it is significant.

Inaccurately gives outdated and harmful information about chronic illnesses, potentially endangering the well being of paitents.

OpenEvidence is using information that has been repeatedly scientifically disproven regarding ME and Graded Exercise Therapy. It is providing as fact incorrect information that is harmful to patients.

TrustPilot is untrustworthy. It is pushing dangerous rhetoric based on outdated and debunked information regarding ME/CFS, a neurological disorder with proven biological mechanisms at play. See "The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS" on NIH.gov

The recently updated Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Mayo Clinic Proceedings Oct 2023 revised by leaders in the field of infectious disease based on recent peer reviewed research should be followed.

It states: “ Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection.1 It is common and debilitating, with a prepandemic population-based prevalence of 1 to 2.5 million in the United States alone and a lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure.1-3 […]

The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation. Post-exertional malaise is a flare in symptoms or the appearance of new symptoms after exertion, often manifesting after a characteristic 24-hour delay; however, 12 to 48 hours is common. Physical activity, cognitive overexertion, and sensory overload may all trigger PEM. It may take a person with ME/CFS days, weeks, or even months to return to previous baseline after PEM.1,7

It has been reported that patients with ME/CFS have impaired oxygen extraction on cardiopulmonary exercise testing in proportion to the severity of their symptoms, with both oxygen extraction and workload being decreased on the second day of 2-day cardiopulmonary exercise testing.8,9 This reflects and may in part explain the characteristic delay between exertion and PEM onset in ME/CFS and distinguishes patients from deconditioned and fatigued controls.8 However, we do not recommend routine exercise testing for patients with ME/CFS, given its propensity to generate PEM and to decrease functional capacity.“

The AI is promoting incorrect information with ME/CFS. It advices GET and CBT, while it has been proven multiple times that this is a dangerous treatment, and in fact making people worse.

Therefor this application is actually promoting the worsening of symptoms and making people more sick.

It's horrible that they are promoting a dangerous and harmful treatment 'as proven' while in face it's proven wrong!

It's using clearly outdated evidence. GET is not helping people with ME/Cfs in fact it is damaging.